I was googling about lymphedema n came across this website. it made me feel good in a way cos it turns out i'm not the only one with lymphedema.

Mine is the left leg. I got it when i was 11 and now i'm 25. At that time, i got ant bites. the redness n itchiness were all gone but the leg has never been normal since. Until i was 21, i never really paid attention to my swelling leg cos i was busy with school matters. but since i graduated from university, it has become a big problem for me. i've started losing my confidence, i become super self-conscious. i've stopped wearing skirts, pants, anything that might show my swelling leg. Anytime and anywhere i never stop thinking about my swelling leg, and i think it's giving bad effect to my leg.The swollen leg is around 2-5cm in diameter bigger than the normal one, from the toes until the thigh. the worst part (the most visible one for me) is from my calf to my foot. I am grateful for still being able to do most activities, it's just that there are times (lots actually) that i wish my left leg were normal.

i feel much more comfortable in cold places (like air-conditioned rooms), which is quite difficult to maintain cos we dont have winter here. My left leg feels much worse if i walk a lot or am in hot or warm places. i was once told to avoid high heels, but even flat shoes dont help me at all, not even flip flops. Traditional massage worsens the condition.

i heard about soaking the leg in warm water and so i tried it and it only worsened my leg, it got bigger n became really red. so i stopped doing that too.tried accupuncture too and it doesnt work.

i've been given lots of medication by doctors who couldnt even give me the right diagnosis. i had taken medication that made me go to the toilet a lot, another to improve bloodflow, vitamin B, another for my heart, so many that i cant remember each of them. But i've stopped taking medication now. The only thing that i can do for now is to stay in air-conditioned rooms most of the time and not walk too much or stand too long.

i've read some of the posts in this forum and MLD sounded great. Does anyone know where i can find MLD in my country, or the nearest possible country from Indonesia? Thanks a lot for listening to me....

Welcome to our family, Celestine. We are so happy that you found this site. Your left leg sounds exactly like my leg. We evidently are at the same stage in the condition of our legs. I learned not to soak in hot water and I do not use hot tubs. I don't think any of us are ever satisfied with the appearance of our arms and legs. I am grateful that I have only one leg with lymphedema. I hope that you will find information that will help you on this site.

Yes i'm glad i came across this site It makes me feel less alone.Monica, unfortunately the medical staff here including doctors aren't so friendly when it comes to their having to learn about a condition then bring it back home to his/her country. From what i know, lymphedema is a rare disease here in Indonesia, well... in most parts of Asia. Those from this region who have got treatments must have been outside the country.

If anyone ever hear of any therapy centre or lymphedema in the Southeast Asia region, do let me know....Thanks a lot

Will a bypass surgery be recommended?i was once suggested to have it done in Singapore. but the doctors said that they couldnt guarantee that my leg would be back to normal. they even said there's a chance it might get worse Should i undergo that bypass surgery?

Hi you have my sympathy. I have lymphedema too. There are a few things I have learned, you must improve your circulation, you must avoid changes in temperature, and learn to do self massage if you cannot have someone provide the light massage that will improve circulation. Can you obtain compression stockings? You sound like you need 30-40mg compression. I know that they are hot and uncomfortable but they really help a lot, To improve your circulation in your legs you can start with walking in the morning when your leg is less swollen. Any way you can start building up the muscles in your calves and thighs will help. YOu will have to work on the circulation every day, unfortunately you can never stop working on the circulation. Good luck

Celestine, I also feel sympathy for you because you are feeling so desperate for help. I am not a medical person, just someone who had had lymphedema in my legs for 30 years. Please do not consider any type of surgery. It will only make things worse. There is no safe surgery to reduce the size of lympatic limbs.

We have more options for treatments here in the United States but our options are also limited because doctors are not well educated concerning this condition.

I am sure Pat O'connor will help you find someone closer to your home. He knows alot more than we do and he has a kind heart. Good luck and don't give up!

Celestine, I had the surgery. The doctor did the inside of my leg first. He cut from above the knee to the ankle. He removed all the tissue that he could. I thought that my leg would be normal. It continued to swell. The lymph glands still did not work. A few years later he operated on the outside of the leg. I thought that this time I would see a normal leg. The operation removed some of the tissue, but it did not cure the problem. If there are any working lymph glands, even tiny ones, they will be removed with the bad.

I thought that I would have a normal looking leg. It did not happen. The doctor would not operate on the foot. He said that there was too much chance that it would not work and I might need skin grafts. He said that previous surgeries on the foot had failed because the skin died. I do not know if my leg would be larger if I had not had surgery. It is a difficult decision.Betty

I have been living with lympedema of both legs and feet. I dont have much information regarding surgery and lympedema but i think that surgery is a NO,NO. It might actual cause more harm than good. The diurectics( medication that makes one pee alot) is also a NO, NO. It causes more harm than good. It actual causes the tissues to harden. Good luck in finding the MLD specialist because i am struggling to get one in my country.

What a boat we're all in. Celestine I share your grief. I also suffer from a lower limb lymphedema for 6 years now. I am very proactive to alleviate my condition and perhaps pass on the knowledge to my co-lymphers. Pat O'Connor is the saint that founded this website and is enormously knowledgeable on every subject regarding lymphedema. I'm sure he'll find a doctor for you in Bali. I was in your beautiful part of the world some 25 years ago and it was right after Pres. Nixon's visit in Bali.

Lately, I hae consulted Dr. Marga F. Massey in Charleston, North Carolina. She and other plastic surgeons have been successful in doing lymph node transfers. Even if it's not a cure, the surgery helped people reduce the circumference of their affected limbs. Unfortunately for me, this is not possible because of age factor, being a kidney transplant patient and some blood problem, according to Dr. Massey. She promised me that she would think long and hard and consult her colleagues about me. In the meantime I'll seek the opinions of other prominent surgeons like Dr. Jay Granzow of UCLA, Dr. Change of MD Anderson in Texas and Dr. Isao Koshima in Massachusetts.

I wish you a road of good treatment for the improvement of your lymphedema. Is Australia too far for you? They have experts there on this ailment that plagues their country (Australia) a lot. They seem to be more advanced than the U.S. when it comes o lymphedema.

thank you so much for getting back at me. i'm much more well-informed now, especially about the surgery.

Evelyn, is lymph-node transfer a common therapy for people with lymphedema? thank you for mentioning it. i'll do my research on it n see if i can find a good enough doctor to consult this with. Yes, i've heard about how good Australia is with lymphedema.. well, it's not far to go there by plane, but i think i need to collect all the info i can get before i pay a visit there cos i think the treatment will be quite costly.

Ann Cunningham, how do I learn the self-massage? and by walking in the morning, would treadmill be okay? that's the only exercise i do at the moment, walking on the treadmill, and sometimes at the park when the weather is nice. will running be fine too?

Everyone, thank you so so much for guiding me through... i hope i'll find some answers soon.God bless you all...

Welcome to the family here. There are a few of us that have been looking for a therapist in Indonesia for you to go to, without much success. But, we will continue to help find one.

I also want to say that I personally have real serious concerns about the entire lymph node transplant concept.

First of all, the procedure is too new for any long term results to be done. Like so many of the earlier surgeries, the intial response was great - but down the road, disasters happened. This is especially true of those debulking surgeries.

The initial reports coming in have also had serious concerns raised about their control methods, selection of patients, time of followup etc.

My greatest concern is this.

There have been questions raise about why some people get secondary lymphedema, while others do not. For example, studies indicate that between 35 - 40% of BC survivors will get lymphedema at some point in their life. That means 60 - 65% don't. More and more, the evidence is pointing to the fact that those who DO get lymphedema already have an "at risk" lymph system. This means their lymph system is already malformed or damaged in some manner. So, when an event happens that could trigger lymphedema (such as some types of chemo, lymph node removal, radiation, injury) - the patient winds up with active lymphedema.

With those of us who are primary lymphers, there is no real certain way to show or demonstrate how well functioning our entire system is.

A good example of this is what has happened in my own life. Early scans showed I am missing major nodes in the inguinal area. But, since until recently, I had no other problem with LE other than my legs, the assumption might have been that the lymph system from the waist up was perfectly good. As it turns out, that is exactly opposite of reality. My entire system was out of whack and I wound up with all over lymhphedema, including terrible lung fluid.

If it is true that our lymph system is at risk, or impaired in ways we do not know yet - and then we remove nodes that could really backfire on us in the long run. For example, according to this surgery, they could have taken nodes from my chest or arms to transplant into the areas where I am missing them from birth. Since it has turned out my entire system was malformed, this means that my all over body lymphedema probably would have been triggered decades before it actualyl did show up.

Basically, are we as they say, "robbing Peter to pay Paul?" In the long term are we endangering the remainer of our lymph system and health for a brief quick fix? These are serious questions that can not be answered yet and it is critical that they be answered satisfactorily so that we can be sure we won't be paying a terrible price from having it done.

Because of all this, I can not urge people strongly enough that before you undergo lymph node transplant, you take these concerns under consideration.

You are once more, the Voice of Reason. Thanks for the links which I read twice. Somestime the repair threatens the fix, and add more grief to the case at hand. As I said I did see Dr. Marga Massey in SC last week and found her to be a very amiable, gentle and kmowledgeable surgeon. However, I think she dodged my question about why this lymph node transplant as a great breakthrough, has not really been endorsed by LRF, by you, or any other lymph orgs. Gene therapy on the other hand, may not be in our lifetime Pat. We'll continue to manage with old gold standards of wrapping, therapy, garments and MLD.

Thank you for the info on lymph-node transplant. I myself actually have doubts about surgery, cos in every website that I can find regarding lymphedema, it is always said that surgery is never curative. If I DO need to have surgery, I prefer to have guarantee that my left leg will be the same with my right normal leg.

Thank you also for trying to look for information about lymphedema therapies in Indonesia. I really appreciate the concern.

I have some other questions if you don't mind answering them:1. I've been having this left-leg lymphedema for 14 years (well, I only knew it was lymphedema less than 6 months ago), will my condition get worse?2. Why is it everytime I wrap my leg with anything, be them party stockings or compression garments or bandages, my left leg seems to be swelling even more?3. I read lots of posts saying that massage is a necessary therapy in dwelling with lymphedema. Are there any DVDs or books sold online? Or do I need to see a certified therapist to then be able to do it on my own?

Thank you seem to be the only words I can say at the moment.... Really hoping to hear from you again.

A Chinese herb doctor once looked at my left leg. He didn't say it was lymphedema, I couldn't remember what diagnosed my leg as because I was and still am bothered by one thing he said. He said that I would lose function of my legs when I get pregnant and give birth.To be honest, this really really scares me. One day I may get married and of course I would like to be pregnant and have kids, but having been told this......

It is not true. My leg did swell more when I was pregnant. It was probably 15% larger. My lymphedema became apparent when I was 17 years old. I became pregnant at age 27. I could tell very little difference in my leg. It did not retain much more fluid than before. After childbirth, the leg returned to the same size as before. After the age of 50, I began to be uncomfortable walking long distances or standing for hours. Now, if I am walking or standing for 3 to 4 hours I will need to rest the next day. If I am planning to walk on one particular day, I try to stay in my chair as much as possible the day before. Betty

I want to give a strong strong second to what Betty said about pregnancy. I know so many lymphers (including my own mom - who had five children) that had pretty much the same experience while pregnant with LE. My grandmother, who also had LE had 9 children (the old farm days) and did fine too.

More then that too, I do question how they get the claim that your children have a 50% chance of having LE. That just doesn't coincide with what I've seen. While they did carry the gene, none of my grandmothers 9 kids had LE. Out of who knows how many grandchildren (my generation), it has shown up in 5 of us. Three of those are my mother's children. BTW, so far only one person in our children's generation has LE and none of "our" grandkids do. This also seems to be more the case with others too.

Of the five of us in my generation who have LE, one probably would have never gotten it except for his suicidal dietary habits. One of them had it show up in her fifties as a result of a seriously bothched rotator cuff surgery. Of the five, only two of us ( one sister and I) actually had it show up at birth - the remainder of us were in our fifties. My nephew that has it had a really strange vascular problem where he had a double (parallel) big vein in his right leg. One day all the valves failed and his leg initially swelled from being full of blood. After that vein was taken out, then the LE showed up.

I so wish these doctors would stop and think and learn before they start telling lymphers all these horrible, dire predictions.

BTW, growing up, the doctors would tell my aunt who raised me that I would be in a wheelchair by the time I was out of high school and couldn't possibly live past thirty. Hmmmm...LOL...so much for their predictions. I may be really slow now, but I am NOT in a wheelchair and will hit 58 in a couple months.

Now for your questions:

(1) No one can actually say with any certainty that your leg condition will worse or spread. At this time, there is no real way of predicting the long term pat, in terms of spreading to other limbs. As for the leg with LE, lymphedema does get worse in the effected limb if it is not properly treated and managed. That is why I and others so stress getting to a therapist for MLD/CDT, compression wraps etc. Also, if it is managed, you probably will be able to avoid a lot of the complications that can occur with advanced LE. Back in 2006 when my health finally collapsed and I was admitted into the hospital, they were counting my longevity in days - LOL - again that was four years ago and I'm still here

(2) Your leg may get larger because of improper wrapping and or using the wrong type of bandage. It is very important to use what is called short-stretch bandages. Ace wraps and similar bandages don't provide the proper compression, plus they can bunch or cause circulatory problems. Go through the page on leg lymphedema and it will give you a good description on how to wrap your leg.

(3) There are some good books available that can help as well:

The Norton School has a large supply of these and here's the link to that page:

A big thanks and hug to you both for making me feel so so so much better Well, since lymphedema is a very rare case in Indonesia, I guess all those doctors just said things to make them look smarter than me, not to mention the medication that they had prescribed for me! And since my parents were "blind" about this illness, they kinda just agreed with whatever doctors said.

This is why I still can't believe that I've found this website! It's late at night here and I haven't got enough sleep these days so I'm going to sleep earlier tonight and wake up fresh to check out all the links you've given me, Pat.

Get tired of you asking questions?? Never, it is a real joy to be able to share and help. It also helps give me a reason to continue my own personal battle for survival since the collapse of my health. I don't know what I would do without my wonderful lymphedema family. You all are a deep source of joy and happiness to me.

I have not had MLD for my legs. The therapists (and frankly me too) are quite concerned about what will happen if that fluid is pushed into my abdomen. Since my ab is already so full of fluid, it could be quite dangerous. I soooooo wish I could get MLD for them.

I do my own limited MLD for my arms, though....but they are nothing like my legs.

You probably should do the lymph nodes of the effected are - and for the ab, since that area is where the fluid would move into.If you not doing the MLD in your arms or chest, it should be ok not to do the lymph node stimulation in those areas.

I'll have to check with Brad, our IT chief of posting a picture. I must be really really dense because I can't seem to figure out how to. LOL....what I would give to have only a fraction of Brad's computer savy

Dear Pat,Thanks so much for your info. How've u been yourself? Is everything good with you?

More questions from me Can we do MLD for the legs though? You mean if we do leg MLD the fluid will be pushed to our abdomen? What happens if the fluid goes to the abdomen?I think the only affected area is my left leg, so I should only do lymph-node stimulation around my leg? Or do you think a whole-body stimulation will do me good as well?

Unfortunately I haven't been able to find any doctors who know anything about my condition, so I don't know who to talk to about therapies

LOL...I'm not a techno person either. If it weren't for our IT chief and co-founder Brad, we wouid be in serious trouble. My specialty is lymphedema, not computers. I would give my eye tooth just to know one percent of what Brad does.

You can do MLD on the legs, although it is really difficult.

When the fluid goes into the abdomen, the lymphatics in that area start the "recirculation" of the fluid, eventually moving it to where the kidneys can get rid of it.

If the lymphatics in the abdomen get overloaded though, they are unable to move the fluid and it basically stays in the abdomen.

If it does that, you can get genital lymphedema. That is why these compression pumps can be so dangerous. They do such a good job of moving the fluid out of the legs that it overloads the abdomen.

This is why it is so important to do the lymph node stimulation in the abdomen before doing leg mld.

Also, the main areas for lymph node stimulation would be legs and abdomen. However, if you wanted to do the whole body, it certainly would not hurt you or cause any problems.

I've sent queries around to try and find any help in Indonesia and am very disappointed thus far. But, we will continue

It sounds scary what can happen if we do improper MLD for the legs. I wouldn't want lymphedema in other areas of my body For the moment, I'll stick to the lymp-node stimulation. Oh Pat, I have some questions regarding the stimulation:1. Which are the points to stimulate on the legs? Because in the picture the points of stimulation are only up to the groin. Is it supposed to end there?2. The most obvious swelling on my leg is from the knee down. Do I need to do wrapping as well as wear compression stockings? Can't I just wear either one during the day?3. Should compression garments be worn during sleeping? I once wore compression stockings to sleep n I was awaken in the middle of the night cos I felt super uncomfortable that I had to take them off right away

Celestine, could it be an option for you to go to some other country nearby to have treatment for a while, ie Thailand, Malaysia, Singapore, getting some compression stockings and getting the doctors to teach you about self-MLD?Also, I was thinking of what you said about Lymphedema not being very common in Asia – I might be wrong, but isn't Filariasis more common in certain Asian countries? It is not the same thing, but perhaps Filariasis doctors, if any exists in Indonesia, could be of some help. Perhaps Pat would give his input on this matter, as I really don't know much about Fila and might be far out here, just had this thought. Pat, thank you for your welcome to me in that other post. Really glad I found this site

Thanks so much for your input. But isn't filiriasis the same as elephantiasis? I've had some tests on that and thank God it is not what I have. I've had this condition for 13 years and my leg hasn't grown bigger since the first time I got those insect bites.I guess in filiriasis the legs do get bigger over a shorter period of time, don't they?

Perhaps in countries like Singapore or Malaysia they have certified therapists who could show me how to do MLD and get the correct measurement for compression garments, but how long do these therapies take? I mean for a therapist to show me how to do it until I'm able to do it by myself, how long do you think it takes?Cos I'm working and I can't take too many days off..

It's been kinda rough here. I had to deal with a cellulitis infection and it seems I am having to drain my lungs sometimes every two days. I think I had unrealistic expectations for the surgeries I had in August and just can't seem to really bounce back from them.

That's a great idea about going to another country to see a therapist. We just happen to have a page with listings for lymphedema therapists in Singapore:

BTW, the term elephantiasis is actually used in a couple ways. One is the lymphedema called Lymphatic Filariasis which is caused by the filarial worms, Wuchereria bancrofti, Brugia malayi or B. timori. You get it from being bitten by a bug - usually a mosquito.

In this country, elephantiasis is also used to describe the last stage of lymphedema. This is where the limb becomes literally as hard as a rock with very skin changes, masses of fibrotic tissue etc.

Thank goodness you don't have that. I can't imagine having a leg like some of the ones I've seen with it. The page will show the areas where it is the worse. The UN has a program to try and eliminate filariasis worldwide. Apparently, if the people in the effected areas are on certain antibiotics, then it will kill the parasite, even in the egg stage. That is really fantastic.

India has some really brilliant doctors who treat filariasis, but they seem to not have much of an understanding of secondary or what we call primary lymphedema.

Now if they could just find a cure for us

The lymph nodes in the groin are the central ones to be concerned about in the leg. You also can wear either a compression garment or compression wrap, but you don't have to wear both at the same time (thanks goodness...whew) that would be sooooooo uncomfortable and hot.

You also don't need to wear those garments while sleeping. Infact, I would be very cautious about doing that as the garment might slip or bunch and cut off circulation. Some people actually do use another type of garment thogh - often referred to as "sleeves."

Dear Celestine,It is just a guess, but I imagine if planned carefully ahead perhaps you could go away for a week or two. You could correspond by e-mail or phone with the therapist you choose and make a plan with treatment and instructions every day when there. You could stay at a hostel to keep costs down. Even if you go for a week only I am sure you would be better off than with no treatment, and I don't think it is that complicated to learn self MLD. I am constantly looking for videos of how to do self MLD myself and yesterday I found this, perhaps that could assist you once you have had instructions from a therapist:http://www.lymphoedema.org/Menu5/Index.asp#VIDEO

Thank you so much for still replying to my post even when you're not in your best condition. I'm sorry to hear that things havent been so good in your case, but i do hope you'll feel better soon.

i cant seem to find other words to say to you than Thank you. i've saved all the numbers and e-mail addresses of those doctors/therapists in singapore and malaysia and when i have more free time, i'll try to contact some of them. I'd really like to go to Australia since it is said that lymphedema treatment over there is much more advanced, but that will have to stay on my list for the moment. Australia is a bit further away and i need to arrange for visa to go there, whereas i can just go to singapore or malaysia when i have the time.

i like how those sleeves can replace wrapping. i'm not so good at wrapping so these sleeves will be so good.

about filariasis, how thankful I am that it's not what i have. i've seen some people with elephantiasis too, and how it breaks my heart. thanks a lot for all these info, Pat. i hope you get well soon and do keep us updated about your condition. My prayers are always with you.

thank you for the page on where i can get a DVD on self MLD. it is possible to correspond with those doctors/therapists before i pay a visit to a certain country. if 1-2 weeks is enough for me to learn the therapy and i'd be able to do it on my own by then, i think i might be able to arrange time.the problem is i'm a teacher, so i can't just take days off. i get holidays when my students go on holiday. i do hope to get something done about my leg on the Christmas/New Year holiday later (keeping my fingers crossed).